“Excuse me…Excuse me…Hello?” She called dispiritedly from behind the curtain.
Rachel had lost her grip on the nurse call button and had been in distress for goodness knows how long before she was able to get my attention. I’m not even sure how I heard her that mourning through the incessant beeping, alarms, and my earplugs, but I did.
I pulled off my eye mask and hastily removed my earplugs as I moved myself around to find the nurse call button in my own bed and get Rachel the help she needed.
“I hear you, Rachel, hang in there I’m getting ahold of the nurse for you.”
Before I could finish, Rachel interjected to apologize and explain the need for my 4am wake-up call, she put the fault of the situation on herself and attempted to offer solace to me for disturbing my peace.
The truth was, Rachel, was let down by her healthcare team. Her body did not enable her to push a call button unless the nurses or medical aids ensured they had placed the modified call button in the palm of her hand, but they forgot to do that before they left her side the last time.
Five days before the wake-up call, I had surgery to remove the MPNST mass, the surrounding, possibly, affected tissue (called the margin, I believe), and have a nerve removed from my calf and re-graphed to a part of my sciatic nerve in my upper right thigh that had been severed as part of the removal of the affected tissue/margin.
My post-surgery stay at the Brigham and Women’s Inn, I mean hospital (BWH), consisted of a (bed)room that maybe reached the standard square footage (132 square feet) and a bathroom that just barely fit a toilet and stand-up shower. The sink took up residence in the (bed)room.
My roommate and I split our facilities and utilized fancy, nearly sheer curtains that resembled something out of That 70s Show for privacy.
You can imagine that my roommates and I grew to know each other more intimately in certain ways than some folks in my life who I’ve known for decades ever would. It is no lie that I could recite a short medical history for each of them and them for me. So being comfortable with this aspect of the stay was critically important to recovery and it was something I quickly learned to accept so I could move forward with my own healing.
I am grateful I did because it allowed me to establish the unique relationships, I had with my two different roommates. Two unique relationships that I have found great value in as I reflect back on my time at the BWH.
Pammie was my first roommate. She had a gastrointestinal (GI) procedure. That was fun. You should have heard her farts. If anyone needed a recording for their productions, Pam was your girl! She and her husband were some of my company each day, and they also liked to gossip and speak their minds. Fortunately, their gossip was harmless and, surprisingly, very entertaining. Especially when my visitors and I were the target of their shenanigans! Did I mention these old timers were also hard of hearing? My guess is they did not even realize we could hear them. What a hoot!
Rachel was my second roommate. It is funny how I too was a patient in the hospital with her, also recovering from a significant surgery, but I became one of her caretakers. I’m still waiting on my paycheck.
Rachel was a gem. Her situation was challenging. Multiple sclerosis and a stroke had significantly impacted her mobility and then she was in the hospital for a terrible bladder infection that resulted in surgery.
When Rachel arrived it was clear the healthcare team needed more room, so, with my consent, my nurse moved my bed 2 feet or so closer to the door to give Rachel more space.
Within maybe 24 hours after Rachel’s arrival, I was ready for discharge!
By discharge it was more like getting the boot! Rachel’s situation escalated and the needs her care team had to attend to negatively affected the care my care team could provide to me. While my caregiver, Charles, and I were working on the discharge process, Rachel’s care team insisted that Charles be removed from the room because he identified as male. And while the (bed)room should have had enough space and strategic curtains to keep this from happening, that was not the case for this situation. By now, my space was barely confined to my bed, and we were nearly in the hallway.
Luckily, the situation deescalated quick enough and I insisted that Charles be allowed back in to help ensure my discharge process went smoothly and we both understood my instructions post hospital stay.
At last, I was finally free to begin the next part of my recovery process at home.
Did you catch the “best” worst stay in the title of my post?
Well, the best part was because I could not have asked for better nurses, doctors, physical therapists, medical assistants, physician’s assistants, etc.
The BWH and Dana Farber (DF) healthcare providers are remarkable! The challenges they face and the mountains they move EVERY shift to overcome resource shortcomings for their patients is extraordinary.
Imagine the bathroom I told you about…Size of a closet…no sink…
I could get to the bathroom in my (bed)room with some help. I needed help because I had an IV most of the time I was there. Fortunately, I didn’t need assistance to get on the potty, but if I did my caregiver would need to maneuver themselves, me, and my IV in a space in front of the toilet of this bathroom that was no bigger than a 4x4x4 box. Did I mention the bathroom also had weird angles? So, it wasn’t a square or rectangle it was an boomerang shape. Now how in the world do you picture a caregiver making this work? I sure can’t, but THEY DO. And these caregivers exude levels of passion, dedication, patience, and care like I have never seen. They truly have learned how to scale the mountain of doing great things with limited resources.
And it is for that reason that I am at peace with my stay and am grateful for the care I received.
I wish that BWH and I could part ways for good, but it will soon be my home again. Round I of the resection did not produce the results we had hoped. There were a few cancer cells left behind on a margin they saw after removing the tumor and examining it more closely, so we’ll be going back in to remove more tissue on December 12.
I see this as another step forward in my war against cancer. I am not done, and I still have a hell of a fight left in me!
Stay tuned for more. I am warming my fingers back up and trying to get back into things. As always, if you want to know how to support me in my journey, below are some ways you can do that. And please let me know if and how I can support you. I am here!
- Donate to my GoFundMe: https://gofund.me/d8dca4c1
- Mail me something!
- Give me a Song/playlist/podcast suggestion(s) (yes, I subscribe to Spotify!)
- Give me a movie/show suggestion(s)
- Know any jokes?
- Consider raising awareness by supporting a local business and buying cancer awareness swag: https://www.etsy.com/shop/DogLoveOriginalBrand
Grateful for each of you!
